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I also been told that skin tests and IgE blood tests don't necessarily pick up on foods that will trigger EE, because EE reactions do not really involve IgE antibodies and there's no known way to test for EE allergens.
Have you tried swallowing cromolyn, Ciel? I'm trialing it now and have seen dramatic improvement with my GERD and IBS-D, despite biopsies not indicating EE or EG.
I think in a few years, they'll be more comfortable labeling us with mast cell something or other issues. Right now it's still too nebulous.
My problem is it's hard for me to pick apart my reactions with certainty, as I have more than just allergies. I also apparently have a mast cell disorder, as well as eosinophilic esophagitis. Both the MCAS and the EoE can cause reactions that you can't test for. (Non IgE mediated). MCAS can also cause reactions to things like sunlight, exercise, heat, emotional stress, etc. Also, MCAS, EoE, and food allergies all interact with each other. There isn't an obvious difference between an MCAS reaction and a food reaction, so it becomes much *much* harder to be 100% certain as to why I'm having severe GI distress, hives, a feeling of impending doom, difficulty swallowing, etc. So I get stuck taking way too many pills, avoiding way too many foods, and much guessing as to what causes what.
I feel for you. I am still trying to figure out my own, somewhat similar issues. Same symptoms you are describing, reactions to foods, exercise, heat/cold, and maybe emotions (I haven't paid enough attention to be sure but I think it has happened -- If I get really upset and panicky I tend to flush and get hives on my face, but I'm not sure if that is a normal physiological response to anxiety or not).
I have not been diagnosed with MCAS of EoE though. And all IgE allergy testing keeps coming back negative. My allergist called me this morning to talk about food challenges, and she touched on the fact that some reactions don't seem to be IgE mediated but nobody knows what does trigger them, because the reactions are to all appearances anaphylactic. And epinephrine helps. I was diagnosed with cold urticaria as a teen, a non-IgE mediated anaphylactoid reaction to sudden drop in body temperatures. It seems to have become much less severe over the last 18 years though, now the worst I get is a few hives and my ears or hands sometimes swell a little. I have reacted significantly to intense exercise. Sometimes the severe GI distress seems to be obviously tied to a food and other times it seems to be random so I don't know if it is a reaction from residual contamination from a known allergy, a new food reaction, or anxiety, or what ???
I have not been diagnosed with MCAS of EoE though. And all IgE allergy testing keeps coming back negative. My allergist called me this morning to talk about food challenges, and she touched on the fact that some reactions don't seem to be IgE mediated but nobody knows what does trigger them, because the reactions are to all appearances anaphylactic. And epinephrine helps. I was diagnosed with cold urticaria as a teen, a non-IgE mediated anaphylactoid reaction to sudden drop in body temperatures. It seems to have become much less severe over the last 18 years though, now the worst I get is a few hives and my ears or hands sometimes swell a little. I have reacted significantly to intense exercise. Sometimes the severe GI distress seems to be obviously tied to a food and other times it seems to be random so I don't know if it is a reaction from residual contamination from a known allergy, a new food reaction, or anxiety, or what ???
Thanks! I want to add that your story sounds *exactly* like a mast cell disorder. Seriously, look into it. There are two main types. MCAS (likely not rare, but no hard knowledge as to it's prevalence) and Mastocytosis (1 in 200,000 rare). Symptoms are mostly the same between the two.
Things to know: MCAS was only accepted by the world health organization in 2007. So most doctors are unaware it even exists. Older diagnossis likely predate it's discovery. Even now the places that know about it are the more well known university hospital's or research clinics. Here in Utah there is just the U of U hospital's allergy department that knows anything about it. Other good examples include the Mayo Clinic. Reputable places that are more clued in on recent medical knowledge. It's also a hard one to test for. (24 hour urine collection and testing seriously sucks. So does needing tryptase taken while you are having a major flare and *might* make a 5 min drive without risking an accident.)
Hallmarks of mast cell disorders are along the lines of allergic reactions you test negative to, and or allergic reactions to things you can't be truly allergic to, like heat/cold, exercise, chemical smells and many other things. For me, yet another clue that a mast cell disorder was going on was dermatographia (Google it).
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That's a peer reviewed paper written by one of the few experts on MCAS. You might find it enlightening. Look into it. Also, anxiety can sometimes be an anaphylactic reaction. That whole "feeling of doom" stuff. To me, I get this at every major flare, I feel like I'm about to lose everything and everyone. Like my whole world is going to collapse out from under me. And yes, it can be both symptom AND trigger for someone with a mast cell disorder, which can really drag out the duration of a flare. Kind of a feedback loop. (5 weeks to get feeling "normal" again is my worst record)
Oh wow, thank you StridAst. I need to look into this more. So much seems to be spot on after initial skimming.
I booked a tree nut challenge for September so I have until then to gather info to talk to the allergist about this.
Do you mind if I start a dedicated thread for this? I know we have chatted a bit in the thread about EE and a lot of what you said there also hit home. I would love to try to make a clearinghouse thread to explore how all of this stuff is related. I have many questions! I also think I need to summarize my own history so I can see it better and would be interested in comparing notes with you about your journey in all this (as much as you are comfortable sharing).
Space, I think you said they ruled out EE for you? Or what happened with your testing?My tests came back negative for EE. My allergist initially wondered if it was a false negative because I avoided my trigger food (wheat) exceptionally well for the four months leading up to the test. (I am someone used to total and complete avoidance, including trace amounts, after all.) I was instructed to try wheat again at home and see if my symptoms returned, and they most definitely did, though not consistently. My last two encounters with wheat gave me hives and other IgE-like symptoms, so I am really confused and scared now. I have my annual allergist appointment in October; no sense booking an appointment before then. I am not in a good place mentally to deal with it right now. My own allergy mystery/saga continues...
Risk factors
Esophageal spasms are a rare condition. They tend to occur in people between the ages of 60 and 80, and may be associated with gastroesophageal reflux disease (GERD).
Other factors that can increase the risk of esophageal spasms include:
High blood pressure
Anxiety or depression
Drinking red wine or consuming very hot or very cold foods or drinks